Semi-results from the doc

[Ender]

I had another urology appointment at the beginning of December. This time with a doctor at the university. The hope was that he would be more familiar with my particular situation. And he was, more than I could have hoped: he actually knew of my original surgeon, had worked in the OR with him, and even shared a few beers (I assume after a medical conference or something). He knew the basics about the procedure I had done.

Prior to the doctor appointment, I had a voiding cystogram and retrograde urethrogram. Neither was as bad as I thought it was going to be. The techs at the university's hospital were... well, more professional than the small-town Catholic hospital where I had the last VCUG done. The last time was humiliating and frightening; the techs did not hide their disgust well and made derogatory comments about my surgery. This time around, the techs were respectful and listened to what I had to say regarding catheter size (surgeon's orders: pediatric sizes only). They also, rather than forcing the catheter when they couldn't navigate the sharp turn between native and neo-urethra, let me put it through.

I'm only just now getting the official results back from the tests, though I could see well enough what's going on from the live monitor feed during the test. The last couple inches of my urethra is very tiny and constricted, it didn't actually show up on imaging--not enough contrast dye? The next section is very, very large. There isn't a Fr size large enough to measure it. Then, there's my native urethra, which is normal. Upon urination, the enlarged neo-urethra and native urethra swell dramatically due to the back-pressure the constricted portion of the urethra exerts on the entire system. I'm not entirely sure what the ramifications of that are, other than it's miserably difficult and painful to pee and I could see how back-flow like that could heighten the risks of a UTI (which I get, frequently).

The aim of the tests was only to investigate the urethra; at this point, my urgency and frequency isn't being looked at. The doctors are sort of hoping that resolving one will spontaneously resolve the other.

When I left the doctor's office the understanding was that he would report the findings to my surgeon, they would discuss, and he would contact me with a plan. I haven't heard back yet.

The one thing that leaves me a little less than hopeful was the first solution this doctor proposed: to cut (split) the narrowed portion of my urethra until it reaches the widened portion. While this would technically get rid of the constriction problem, in order to do that my penis would be split along its entire length (sorry guys, that is graphic). That is terrifying. I do not know if I could mentally handle that. That also seems like a very last-resort option, so I am wondering why he suggested it first. I am starting to suspect why, now: I asked him if dilating (stretching) the narrowed portion with progressively larger catheters would help. He didn't say no, but he also didn't sound enthusiastic about it. He gave me catheters to use as a 'temporary fix.' I'm finding that, while the dilation helps very temporarily, the trauma to the urethra and resulting inflammation makes it not worth it. The inflammation cancels out the dilation effect. The dilation also hurts and I bleed (minimally). I'm perhaps not doing myself any favors by doing it, just causing more damage. I feel like I'm in between a rock and a hard place. I'm just getting used to the painful urination and burning. I'm really very frustrated right now; I think that's why I'm writing this.

If the above didn't quite make sense, more context is here: http://www.incontinentsupport.org/phpBB3/viewtopic.php?f=12&t=1505&p=13028#p13028

Thanks for listening.

[PB&J32]

Sorry to hear of your situation, Ender. Are you using intermittent catheterizations or Foley catheters?? Having s foley in for a week or two at a time may be better than intermittent catheterization. Just a thought......

[Ender]

Intermittent and just through the first few inches until I reach the wide portion of the urethra. I don't actually go through to the bladder, not necessary.

I have thought along the same lines, though--leaving the catheter in to dilate for longer periods (not just 5 minutes or so) might help. Getting the intermittent to stay in place won't happen, so something like a foley would be needed. I don't really know how I would go about getting one installed; ask the urologist and see if he approves, I suppose?

[tangerine]

The option my prospective surgeon gave if I came in to urinary problems - in this case retention, was to either have the urethra relocated below the penis or to have a suprapubic catheter. Both are a bit drastic...but I wonder if they were mentioned?

[eighty5onions]

Hi Ender, in BDSM online stores, you may be able to find something called urethral sounding (or google it). I guess some people use it for sensation. I think I saw a kit with a whole array of sizes, so you could start out small and go up. It's probably silly to suggest, because these sounding tools are a medical tool of sorts and your doctor is probably already aware of something like that. Maybe if your doctor hasn't mentioned it before, though, you could bring it up?

[wheels5894]

Sorry to hear of the problems, Ender. I think you would be wise to stick with the intermittent caths. They are associated with a very low rate of infection compared with a foley which often gets a bladder infection in the first day!

[Ender]

@tangerine:
Relocating the urethral exit underneath the testicles was mentioned (essentially reversing the urethral lengthening) in addition to the suggestion of 'splitting.' A suprapubic catheter was not mentioned, though I would not want to live long term with one. I'm a little too active (rough sports) to manage well with a tube and bag.

@eighty5onions:
The urologist actually used metal sounds when he was determining the size of my urethra. He did not want me using metal for fear of me unintentionally damaging myself (creating a false passage), so he sent me home with the silicone catheters.

@wheels5894:
I know, a Foley will probably land me with an infection. It would be a short term solution to try to get a longer-lasting dilation. Ultimately, probably not a sustainable solution. I'm at the stage now of 'I'll try just about anything that's not more surgery.'

That said, my urologist in the States and my original surgeon in Belgrade apparently have some sort of joint surgical plan. I have an appointment mid-April to talk about it.

[Ender]

Update: finally heard back from my urologist and original surgeon about a surgery plan. I needed to schedule a follow-up to talk about it and this urologist is apparently very busy; he reliably schedules 3 months out. This is moving at a snail's pace.

Anyways, the recommendation is to have my penis and scrotum split midline from tip to perineum. Cut out any scar tissue that may have formed, then take a buccal mucosa graft from inside my right cheek (left has already been used for donor tissue), lay it in my urethra over the defect, close everything again and hope it heals well this time without scarring and creating another stricture. So it's essentially a re-do.

Before this can happen, I have a cytoscopy scheduled in another couple months. I was unable to have one at my initial round of tests because they did not have a pediatric sized scope on hand and the surgeon did not have time to do it at this appointment. After that, the surgeon will report his findings based on the cytoscopy and I have to make a decision. He offered to just proceed with the surgery directly after the scoping, but frankly--I want to know what the results are and have time to think about my decision. I also need to figure out when I would be able to take a few days (or more) off work for recovery.

Meanwhile, I have been so busy with work that I havent dilated in a few weeks. Not really something I feel like doing after a 14 hour day. Turns out that was a bad decision, as I'm presently struggling to pass larger quantities of urine, though it does leak out in smaller amounts.

Just an update. So it goes.

[ILuvLA]

Ended. I am sooooo sorry to hear about all your trials. I can't even imagine all that you have endured thus far, let alone the toll it must be taking on your body. I do hope and pray that you can find the relief you need.

[Patrick]

Ender,

Please, please do not allow this to go to the point that you cannot fully empty your bladder. You have been through the mill; don't allow your work schedule to compromise your health.